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Even though Nora has successfully weaned down to the less restrictive Modified Atkins Diet, she still takes a daily vitamin and calcium supplement: 1/4 of an adult Centrum and 500 mg of calcium citrate daily.

For the last six months or so, I’ve been using a simplified, modified version of Christy’s B^3 recipe.

2 adult Centrum

16 capsules of Solaray calcium citrate (each capsule is 250 mg)

40 g of butter

80 g of Adam’s peanut butter

I grind the multivitamin with a mortar and pestle, break open the calcium citrate capsules, and mix it all in with the butter and peanut butter mixture. I warm it slightly then pour it into 8 small silicone cups and put them in the fridge to solidify. Each cup then has approximately 1/4 of a multivitamin and 500 mg of calcium citrate, along with 10 g of peanut butter and 5 g of butter. The vitamin is bitter and the calcium citrate is chalky, but the peanut butter seems to do a good job of masking it.

Hello everyone!! My name is Amanda Swick. In an earlier post, Christy introduced you to our family but I thought I would share a little more about us. I am a stay at home to two beautiful boys. Josiah is 7 and Jaron is 5. Jason is a Christian minister who works with college students at Oregon State University. Jaron was diagnosed with Doose Syndrome in 2013 and was put on the ketogenic diet. He is currently 17 months seizure free. You can read Jaron’s full story here. Our family enjoys hiking, camping, riding bikes, going to the beach, playing board games and going to the library. Jason and I are excited to be able to encourage and help others on the ketogenic diet journey. Ted and Christy were a big help for us when we first got started and our hope is we can return the favor to others.

As I was thinking about what our first post would be, I decided I would just start at the beginning, with Jaron’s initiation on the diet. Nora was eased onto the diet from home, but Jaron went through a hospital initiation. If you are considering a hospital initiation, here is snapshot of what one is like.

We arrived at the hospital Sunday with Jaron having drop seizures every 3-5 minutes. We spent the rest of the day get labs done and getting settled into a safe environment for Jaron. Monday morning was an EEG and the neurologist diagnosing Jaron with Doose Syndrome. I immediately asked about putting Jaron on the Ketogenic Diet. He was already on two antiepileptic drugs and they weren’t working, so the odds of another drug working were very low. The diet had a greater chance of helping Jaron than another drug. The doctor agreed this was a good choice for Jaron and would have the dietician come in later that day to get us started.

The dietician and I first talked about whether the ketogenic diet was a good fit for our family. She described what was needed to make the diet work: lots of hours and loads of tears from all of us. She didn’t do this to deter us, but to be realistic about what it would take to make it work. She wanted me to commit to at least 6 months on the diet before I could give up. At that point, I was willing to commit to anything because Jaron was falling and hurting himself so much.

Next, we talked about what ratio to start Jaron at. We decided a high ratio of 3:1 was a good place to start since we wanted to get some seizure control quickly. Starting at a high ratio was only possible as a hospital initiation. At a 3:1, Jaron needed to be monitored closely for the first couple of days to make sure his body (possible kidney and liver distress) could handle the diet.

Finally, we had to decide what foods the hospital had that Jaron would eat for his first keto meal. I was under the impression from my research that Jaron would have to fast for 2 days before starting the diet. Since they discovered that easing into the diet is just as effective as starting the diet as a fast, they no longer required a fast. Instead they would start his first meal at ½ of his target calorie range and increase his calories over 24 hours.

We decided Jaron’s first meal would consist of turkey, lettuce, red peppers, mayo, and cream. Jaron loved the turkey, lettuce and red peppers. He tolerated me putting mayo on his lettuce, but it wasn’t his favorite. He HATED the cream. Jaron liked milk but he didn’t like cream. It took a lot of coercing to get him to drink it all. That was hard, but the worst part was getting him to take his medicine (he was on Keppra and Depakote at the time). The hospital’s way of giving him adult medicine that he can’t swallow was to crush it up, mix it with water, and feed it to him with a syringe. Yuck!! Through a lot of encouraging and bribing we would get it all into him. He was such a trooper.

After 24 hours on the diet, Jaron began to go into ketosis. They wanted to monitor him for another day to make sure his body was handling the change in diet well. During that day, we had to make sure he was drinking enough water and counted seizures for any change.

Even though his body was handling the diet well, there was no initial change in seizure count after a few days so they upped the Depakote, which would help for a few weeks, and sent us home. It would be a few weeks before we started seeing the seizure count go down due to the diet. It would be three months and an increase to 4:1 before we started seeing seizure free days.

Looking back at our experience with hospital initiation, there were things that I liked about the experience and things I didn’t. I liked the hospital initiation because I had daily contact with the dietitian. We sat down for an hour the first day and she showed me how to use the Ketocalculator. As I began making Jaron his meals at the hospital I had her there through the whole process. As I made meals on the Ketocalculator I could ask questions and gain confidence.

Also, being in the hospital forced me to only focus on figuring out how to administer the diet without the distractions of everyday life. This made the transition to the diet at home much easier. While we had issues with Jaron taking his medicine and eating all the food in the hospital, I was prepared to head home with ideas on how to address some of the obstacles we faced while in the hospital.

The tough things about the hospital initiation all revolved around the uncomfortableness of being in a hospital. Our food choices were limited which made it hard to find meals that were appetizing. We didn’t sleep well because we weren’t in our own beds. And there is the cost of staying in a hospital.

From Jaron’s perspective, the process wasn’t bad. We were at a children’s hospital so there was always something fun to do. People came in and sang songs with him. He could go to the play room and play with the toys. He never begged to go home and he seemed content most of the time. The only thing he didn’t like was the morning blood draws and the nasty medicine.

Overall I am glad we did a hospital initiation as it helped to arrive home prepared, confident and mostly ready for the days to come.

This week we are refreshing our blog! After almost 5 years of living with the reality of epilepsy, treatment and recovery, we are taking stock and updating our blog to reflect where we have been and where we are going.

You will notice the new look at the new name: Oregon Keto Kids. Now that Nora is almost 3 years seizure free and we are weaning her from the diet, we are turning our attention toward supporting other families as they use the ketogenic diet to overcome epilepsy. Of course, this blog is always for everyone, no matter where you live, but it is also a central part of the more hands-on support group we will form for parents who are starting the diet at OHSU Doernbecher Pediatric Neurology’s Ketogenic Diet Program. The first step is working with other families who are emerging from their journey with the ketogenic diet armed with the experience to reach out to support others.

Thus, we welcome Amanda and Jason Swick as co-bloggers at this space. Their son, Jaron, was diagnosed with Doose Syndrome when Nora was about 1 year seizure-free. They connected with us after Nora’s story was in our local newspaper. We are all grateful that our story was told and that another little person and family could use the ketogenic diet to overcome epilepsy. The Swicks are an amazing family and they are also ready to reach out and support others.

During the next few weeks I will be updating many of our main pages. I haven’t looked back at them in ages, and see how out of date they are! It’s time to re-write Nora’s story and call on our experience to re-write the other general informational pages.

It’s an interesting experience to look back at those times, remember what we were feeling and experiencing, and to see the journey to now. We are thankful that it went as well as it did. Ted and I feel that we don’t have a lot more to say on a regular basis and are not making as many recipes anymore, so maybe we will spend some time curating the blog for the “best of” and doing some summary posts of the challenges that we faced.

Amanda will be blogging about Jaron’s experience (you can read Jaron’s Epilepsy Story now, and look for updates in the future). She also has experience with Doose Syndrome, the Keto Calculator, reflux, kidney stones, camping and more, so you will learn a lot from her experience and perspective.

Our blog-refresh plans are not done yet, so we will keep you posted as we make changes so that you can stay in touch. We are always happy and grateful to hear from other parents and supporters.

And we are looking for support! If you want to help get the support group off the ground, we will be looking for volunteers to help us get donations to buy basic supplies for families, print a welcome packet, buy books about living with food restrictions for kids, etc. We would also like to contact some of the companies that make good keto foods to get coupons or other discounts (for coconut oil, macadamia nuts, nut flours, cream, etc.) Please contact us if you want to pitch in; donations will go through the Doernbecher Foundation and will be tax deductible!

We visited Dr. Wray at Doernbecher yesterday for Nora’s 6-month Keto Clinic appointment. She is now 35 months seizure free and weaned to the Modified Atkins Diet. As usual, she ran through the standard clinic neurological checks and passed with flying colors.

Her blood and urine tests still have a few remnants of the diet that we hope will continue to resolve as we continue to liberalize her diet. Her blood acidosis level is still a little high and she still has the beginnings of kidney stones. The treatment for both of those issues are compatible and simple: plenty of water intake, and we can add some dietary citrate. I’m still doing some research into the citrate options; she already takes calcium citrate and we will have to decide if we start supplementing with magnesium or potassium citrate.

We will continue to wean her from the diet slowly by changing how we administer the diet. At this point, she is getting 40 grams of carbs per day and has no limits on protein or fat. We are only weighing and tracking her carb intake to make sure that she doesn’t exceed her 40 g limit, but we are not tracking her daily ratio anymore.

Our next step will be to estimate carb portions, much like diabetics are taught to do. Then we can shoot for an estimated 8-10 grams of carbs per meal, 5 times per day (still plenty of snacks in her day). We will give up the precision of the weighed foods, with the understanding that her carb intake will fluctuate more from day to day but will stay comfortably lower than a traditional US diet.

Nora will not see a big difference in her diet, but I hope that it frees Ted and I a little more. We have appreciated our little friend the gram scale, but I look forward to throwing together quick meals without consulting the spreadsheet and the scale first.

This is also an opportunity to start teaching Nora to feed herself. She would love more freedom and has appreciated the ability to get herself a piece of cheese anytime she is hungry. As she gets older she will appreciate more freedom, and we all need to learn healthy eating habits for our own bodies.

We have been going back to Doernbecher for check ups every 6 months, and now we will wait a whole year until we go back again, and Dr. Wray thinks that we won’t have to do those big nasty blood draws anymore! Nora is very happy to hear that news!

We do enjoy our trips to Portland. This time Nora wanted to go to the Japanese Gardens and brought her Japanese robe and umbrella that she got for Christmas. We also met up with another keto kid, Annie, who is moving from MAD to a higher ratio to get better seizure control. It is so important for families to support each other through this, because we have so much to give to each other that our doctors and dietitians don’t have experience to help us with: the daily grind of meal preparation and the learning curve. As we continue to wean Nora from the diet and wean ourselves from the gram scale, we plan to ramp up the support group.

We made it a Japanese themed day (on St. Patrick’s Day, no less, but at least we beat the crowds!). We had sushi at Masu Sushi, which felt like a fancy place but was low-key for lunch. Nora can eat edamame and sashimi until her belly is content, and here we found some dungeons crab rolls that both kids adored (Anders got the rice from Nora’s, a win-win).

After lunch we walked down to the renowned Powell’s City of Books. We found a fabulous book of Japanese folk tales, several other books picked by each kid, and a few games. Good times in the big city. Now we will have to plan to come back once and awhile just for fun.

We came into the ketogenic diet in a non-standard way for Nora. We started with a low glycemic index diet for a few weeks in the fall of 2011, then to a modified Atkins diet for a few weeks, then to a 3:1 ratio ketogenic diet for a few months, and finally to a 3.5:1 ratio ketogenic diet from April of 2012 to April of 2014. Each increase provided better seizure control.

Because we transitioned slowly into the ketogenic diet instead of the traditional 24 hour hospital induction, we had time to develop many of our own tools for tracking Nora’s diet and seizures. When we went full keto, we continued to use these self-developed tools — mainly a Google Docs spreadsheet — with the approval of our neurologist and dietician team. (Although we administered the diet differently, we greatly support the Charlie Foundation’s Keto Calculator, and recommend that tool for administering the ketogenic diet.)

Starting April 2014, after two years of seizure freedom, we slowly weaned Nora by decreasing the ketogenic diet ratio by 0.25 every 3-4 weeks. In December of 2014 we finally weaned down to a 1:1 ratio. We then transitioned to a modified Atkins diet in which only carbs are tracked (as opposed to the full suite of carbs, protein, fat, and fiber). This greatly simplifies administration of the diet, but we still use a simplified version of our spreadsheet.

We get a lot of questions about our methods for administering the diet, and because the modified Atkins diet can be done with less strict medical oversight, we are now posting a version of this spreadsheet in case anyone finds it useful for administering the modified Atkins diet. (For the ketogenic diet, we recommend using the Charlie Foundation’s Keto Calculator as that is a widely supported and vetted tool.)

We recommend using a tool like this if you aren’t sure you are estimating portions right, and want to learn the proper proportions of foods using a gram scale (a traditional kitchen gram scale will be fine, no need to measure to the tenth of a gram as in the ketogenic diet). We have also found it useful in weaning off the ketogenic diet, after you have been accustomed to weighing all food and want to learn how to think in portion sizes again and only count the carbs, not the ratio.

Note that the modified Atkins diet is still a high-protein, high-fat diet. You are still going for a 1:1 ratio. This spreadsheet only helps you count carbs and is not intended to help you plan full meals at a 1:1 ratio. Notice that cheese and meats are not listed (unless it is a product with significant carbs). Add protein and fats to every meal, and use the higher fat foods in the spreadsheet (labeled in green) to supply healthy fats.

WARNINGThe modified Atkins diet is less demanding on the patient than the ketogenic diet, but it is still a restricted diet with potential side effects. We strongly recommend you inform your medical care team if you are going to use the MAD diet for your child. Low carb diets can interact with other medications, and some medical conditions are contraindicated with low carb diets and could be very dangerous. Check with your medical team. If your child is struggling, sick, or is continually not feeling well, stop the the diet and check with your medical team.

Instructions are given in the “INSTRUCTIONS” tab in the spreadsheet. Foods with no (or very little) carbs (such as butter) are not listed in the spreadsheet as they don’t need to be calculated and weighed. But they will still be part of most meals. As an example, for a morning snack for Nora I would like 3 grams of carbs of apple and 1 gram of carb of 85% dark chocolate and 3 grams of carbs of peanut butter. Using the MADSheet, I put 3, 1, and 3 respectively in cells J24, J27, and J29. It is then calculated that I need 24 grams of apple, 3.6 grams of chocolate, and 24 grams of peanut butter. If I were doing this for Nora I would then put an additional dollop of butter in with the peanut butter to push the ratio up a bit, but I don’t need to measure that as it doesn’t have any carbs. (In the full keto version of the diet though, I do need to calculate and weigh the correct amount of butter along with everything else.)

Lastly, the MADSheet tool is not intended as an optimized, finished product in any way. We do not guarantee the spreadsheet to be free of errors or bugs. We are providing it as a template or starting point to be modified as necessary to fit the needs of the user. Please delete foods, add foods, change and modify cells and calculations as you see fit. Please take care to double check all calculations and formulas, especially after making modifications. This is not intended as medical advice. Please check all methods with your medical team. Use at your own risk.

When we began diet therapy for Nora, we started out easier with the Modified Atkins Diet (MAD). We could see that it helped, but didn’t completely control her seizures at the time, so we kept stepping up the ratio over several months until she was on a 3.5:1 ratio ketogenic diet. Now we are through the wean and back to Modified Atkins again. We just keep taking steps and all is well. Still seizure-free, growing and full of energy!

In early December her ratio was lowered down to 1:1, which is Modified Atkins Diet, but we were still calculating and weighing all of her food. When the kids got out of school for winter break we took another step: we are only calculating and weighing the carbs that Nora eats, but giving her any protein and fat that she wants. Although we are still using the gram scale, we spend a lot less time working out each of Nora’s meals and she is happy to eat cheese or nuts when she wants to.

We also moved her up to 40 grams of carbs, just another baby step up, but it has allowed her to have yet more fruits and vegetables.

Eventually we will be estimating all of her foods, even the carbs. But after calculating and weighing to the gram for so long, we realized that we really don’t know portion sizes! We weigh things without really looking at how much is there. We are using this time as a chance to re-learn portion sizes so that we can eyeball meals that will be a good balance for Nora.

Ted reconfigured the spreadsheet that we use to calculate meals for our latest step. Now we enter the number of carbs we want to give her from various available foods, and the spreadsheet tells us how many grams of each food to serve. It’s pretty sweet. He color coded it so that we learn which foods are “danger zone,” “caution,” and “almost-free.” The coding is based on the number of carbs per calories in the food. For example, if she were to eat her whole 40 g of carbs from raisins in a day, she would only get 13% of her day’s calories and would need a lot of other foods. If she got her hands on the raisin box and went to town, she would stuff way too many carbs into herself before she was full. But if she ate her whole 40 g allotment of carbs by eating macadamia nuts, she would get 379% of her calorie needs in the day! In other words, she would naturally stop eating macadamia nuts before she could get close to 40 g of carbs because she might explode. Ted is so clever.

There are several foods that fall into the “almost free” category, which we may just remove from the spreadsheet altogether soon and make them free. Macadamia nuts, walnuts, cream cheese, string cheese, avocado, flacker. Of course, any carb-free food is free too. As long as we get some of these “almost free” and carb-free foods with fat into her every day, we have no problem keeping her at a 1:1 ratio. During the first several days of estimating we double-tracked it using both of our spreadsheets. We calculated her carbs and estimated her meat, cheese and fat portions, then weighed them and put the amounts served into our old spreadsheet to find the ratio over the day. We were easily at or above a 1:1 ratio as long as we were mindful about the basic ratio of each food.

Our Foods by Ratio post has helped us to keep her ratio on track. The big danger-food in that list, in my experience, is cottage cheese. Even full-fat cottage cheese has a very low ratio. During one of our MAD transition days, I gave her a meal of cottage cheese, turkey, and applesauce. I knew immediately that it would be very low fat, so supplemented with some tea and cream and added cream to her cottage cheese too. She actually prefers her “soupy” cottage cheese anyway!

Transitioning her to a more normal diet has been interesting. She loves having more banana and a bit of honey with her peanut butter. Now she eats her MAD About Granola every morning with whole milk! The granola is over 1:1 ratio, so adding whole milk at a 0.4:1 ratio can balance it out to 1:1. Whole milk is still pretty carby; it is in the “danger zone” category of foods but she loves it.

Other new foods get surprising results. I offered her a bit of rice, maybe a tablespoon, equal to around 5 grams of carbs. She wouldn’t eat it! She had a big bowl of edamame instead, and some sweet potato. Another night I offered her a fried Korean dumpling, 6.6 g carbs per dumpling and most of her dinner allotment for carbs. She took one bite and didn’t want any more. It is interesting how her tastes have changed, or maybe she is just nervous about trying too many new things, which is expressed in disliking the food. I’m not in any hurry as long as she is happy.

Although it is supposed to be easier than the ketogenic diet, I remember feeling like MAD was harder because Nora couldn’t eat all of the protein. It is 2-3 times the daily protein requirements for a child her age. Now that she is free to eat or not eat the protein that we serve, she seems happier. Although I still don’t understand how a child can refuse her whole serving of our Christmas ham (honestly, “do I have to eat the ham?” what the heck?). She does not refuse bacon, however.

For Christmas brunch I made the basic waffle recipe from The Joy of Gluten Free, Sugar Free Baking with minor modifications. I was able to use whole milk and the whole family ate it. No more 2-recipe mornings for pancakes or waffles for us!

Mix the dry ingredients in a medium bowl and the wet ingredients in a small bowl. Combine and mix very well until the batter has a uniform consistency. Alternatively, you can put all ingredients in an electric mixer and mix on medium for about 3 minutes, stopping to scrape down the bowl. If you are making large waffles, whip the batter well until it is foamy and aerated.

Cook as pancakes or in a waffle iron as usual.

If you like, you can add a no-carb sweetener, cinnamon or nutmeg for flavor. After weighing and cooking some for Nora, I added maple syrup to the batter to make pancakes for the rest of the family.

We made mini-pancakes and waffles, 29 g of batter each, as shown in the nutrition facts. Then each pancake has 2 grams of net carbs and a 1.5:1 ratio. We paired it with ham, a dollop of cream cheese, and blueberries with a touch of maple syrup (wow!). Nora is all about Celestial Seasonings Country Peach tea with cream these days, a nice way to add a little decadent fat as a treat.

Ann Lamott wrote a book called: “Help, Thanks, Wow: The Three Essential Prayers.” I’m sure she is not the first one to notice. Honestly, I haven’t read the book (yet). But now that I know to look, I’m seeing the pattern.

Exactly 4 years ago, the day before Thanksgiving, we entered the “help” phase when Nora had her first seizure. We saw doctors, started keppra, got lots of help from our community. Then she was seizure free for quite a long time, until they came back and the myoclonics appeared. At this time three years ago we were practically shrieking “HELP!” from the rooftop because nothing was working. Then we found the ketogenic diet, Dr. Wray joined OHSU, and we got started.

It worked. We started her on the Modified Atkins Diet (MAD) and saw improvement. Thank you. After breakthrough seizures we started increasing the ratio. Fewer seizures with each increase in ratio until we reached 3.5:1 and held steady there. Since her last seizure in April 2012 we have been counting the seizure free days. Thank you! By July of 2012 she was weaned off of all antiepileptic drugs and she was growing and developing normally. THANK YOU! In April 2014, after 2 years seizure free, we started a slow wean off the diet.

Now, we enter “WOW.” Almost 3 years on diet therapy, 2 years and 7 months seizure free, and Nora is weaned back to the 1:1 ratio of the Modified Atkins Diet. We have come full circle and are re-learning MAD again. When we do the ketostix urine test at home, she still has some ketones but it is very weak now.

Not that we don’t continue to say “help.” Nora’s kidneys have been acting up again. She complained that her “side hurt,” and when we asked her to show us she put her hand right over her kidney and drew a line around to her bladder. She had a urine test earlier in the week–yep, crystals were present, maybe stones. Maybe a small stone had already passed; we will never know. This isn’t a major threat, but a bummer. We are so close to the end of the diet and she is otherwise great. Skipping is her latest hobby and she is excited for swimming lessons because she likes going in the deep side of the pool now. Her ultrasound was normal, so her pediatrician wants to wait on further testing while keeping her hydrated to help stop any stones from forming.

Normally I don’t get too down about this stuff and didn’t this summer with her kidney issues, but it wears a person down over time. When you know a family with a health problem, especially a child, your heart goes out to them for the anxiety and fear for the beloved one’s health and safety. But one thing I’ve learned is that it is not just the fear of the health consequences, but also the sheer amount of time and energy that goes into coordinating doctors, tests, advocating to get something done in a reasonable time, making sure that lab work contains an order for the right information, sorting out what is meaningful and what it not, doing the research to ask the right questions and understand the answers. I’ve learned the hard way that you should double check things up-front instead of making the trip back to the clinic for another blood draw. I feel grateful that Ted and I are in this together and Nora is such a trooper about it, but at the end of the day it still leaves you exhausted and saying “help” even when there is nothing left to do.

Looking for more reasons to say “thank you” is a powerful strategy. As long as I was in contact Dr. Wray regarding her kidneys, I asked if we could do a blood test to check her blood acidity (see The Blood Acid Chronicles post for more info). She is still taking baking soda dissolved in water twice per day and would be a happy girl if weaning the diet means that she can stop taking baking soda. She was a super champ about the blood draw (despite requiring 2 pokes) and we brought flowers to Erika, our favorite phlebotomist, because she is changing jobs and we won’t get to see her anymore. Erika and I cried, but not Nora. Even after all of that, Nora lost it when I dropped her off at school because she was late. Thank goodness for teachers who say, “I’ve got this.”

The next day we got to “thank you” again: Nora’s blood acidity is back in the normal range. She can wean off of baking soda in the next 2 weeks….IF she has no kidney stones. The baking soda helps to keep stones at bay too. If Nora doesn’t complain about the side pain anymore then we will make sure she stays hydrated and start weaning the baking soda too. Wow!

I can hardly believe that Nora is a 1:1 again. We will continue to calculate and weigh food for the next 3 weeks, as scheduled, to get a feel for MAD portions. Then we will start estimating some meals without weighing if all is still going well. We still have her carbs capped at 38 g per day, which has been the limit for the last 3 weeks. At some time we will start moving up the carbs and down on the protein to try to stay around 1:1, but as we start estimating meals those numbers will be less precise.

We have to feel this out and keep watching Nora, which brings me back to HELP! all over again. Not that there is anything imminently wrong, but I’m holding my breath and hold the hope tight in my heart like a small fluttering bird. I know we have been in the hopeful watching and waiting before as we began the first count of seizure-free days. I hope that one day 3 months from now, then 6 months from now, then 1 year from now the reality of that monumental passage of time will hit me and I will live in a place of Thank You! and WOW! But right now we wait in hope for those days. Help! Thank you! and Wow! all come and go through the same revolving doors through our lives and right now they are making me a little dizzy.

Continued good news: Nora is down to a 1.25:1 ratio today and still seizure free. We are in the home stretch!

Just a word about the “ratio” for newcomers to the ketogenic diet. Remember that the ratio is the amount of fat per amount of net carbs+protein in a food (and remember to first get net carbs by subtracting fiber from total carbs; fiber is good!).

Example: In 100 g of macadamia nuts, there are approximately 80 g fat, 6 g net carb and 8 g protein. The math:

The ratio is a “magic number” in the ketogenic diet, with higher fat telling your body to use fat as an energy source by turning fat into ketone bodies for fuel. The traditional form of the diet uses a 4:1 ratio. Nora’s highest ratio was 3.5:1 for 2 years. Since April we have moved it down by 0.25 increment steps (so 3.25:1, 3:1, 2.75:1, etc.) every 3 weeks.

As we have moved down the ratio step by step, I’ve realized that I have a way of thinking about keto foods by ratio when I am building a meal. In the beginning of the diet, the big challenge is to think low-carb. Then you add in the fat needed to get the ratio. But after doing this for so long and having a broader range of known low-carb foods, I’ve started thinking about foods by their ratio instead of their carb content alone. That helps us create keto meals that use naturally high-foods, rather than taking big doses of fat on the side, and that gets much easier as we move down on the ratio.

The spreadsheet that we made to calculate meals shows us the ratio of each food that we are using, so as we changed ratios over the last 6 months I realized how much I was using that knowledge about the ratios. I hope that explaining it and giving some examples can be a guide to others.

At very high ratios, there are very few foods that are above that ratio on their own. Fat sources are critical to boost the ratio of any meal. All-fat foods that are served to achieve a high ratio are: heavy cream, butter, oil (Nora takes fish oil, others use lightly flavored oils like canola), and coconut oil for its ketone-availability.

Low-carb foods that Nora eats regularly but have very little fat: berries, red pepper, carrots, popcorn, apples, low-carb tortilla (Mission Carb Balance), sliced turkey or ham. We have to serve enough fat, either through the all-fat options or higher ratio foods in order to meet her fat needs at her current ratio.

Here is a table of regularly-used whole foods organized by their ratio, amounts given per gram of food served. Each color indicates a different ratio range:

Red = greater than 4:1Orange = between 3:1 and 4:1Green = between 2:1 and 3:1Blue = between 1:1 and 2:1Purple = Less than 1:1, but not insignificant fat content

If you start by thinking about your child’s ratio, you can see the foods that are above and below that ratio. Higher-ratio foods can support or increase the ratio when paired with lower-ratio foods. At the traditional ketogenic diet ratio of 4:1, macadamia nuts and kalamata olives are superstars, with avocado not far behind. But even though you can’t make a 4:1 meal without fat supplementation (actually you could, but it would be a lot of macadamia nuts!), you can choose higher-ratio foods in order to put less fat on the side.

If you move down the ratio to 3:1, you get a few more of those helpful foods. We looked at all of the cream cheese options at our grocery stores and use a brand called Primrose, which has a higher fat content than some other brands.

It’s interesting that there are not many whole foods in the 2:1 to 3:1 range (green) that we use regularly. Sour cream was the only other one in my master list, but Nora doesn’t like it. Some brands of cream cheese fall into this ratio too. Many of the baked goods I make are in the 2:1 ratio because you can mix fats, nuts, eggs, etc., to end up with a 2:1 ratio item.

When we went below 2:1 on Nora’s wean schedule, I realized that there were a lot more foods on either side of her ratio and it got me thinking about foods by their ratios. Now that we are at 1.25:1, Green & Black’s 85% dark chocolate is above her ratio! We can put dark chocolate on berries, maybe with some nuts on the side, and have a perfectly delicious at-ratio snack without a side of cream.

After our next step down in 3 more weeks, Nora will be at 1:1 which is considered the Modified Atkins Diet (MAD) and we can start estimating meals. Knowing which foods are above the 1:1 line, and which are just below the 1:1 line, will help us make combinations of food that keep her meals around 1:1 without all of the calculating and weighing.

This list also shows some interesting contrasts. Just look at the nuts. Macadamia nuts are a stand out by any measure. It is amazing that they stay solid when warm! Walnuts are also excellent. But almonds are pretty far down on the list as a ketogenic diet food. They are not bad, but if I were going to give nuts to Nora I would choose a higher-fat nut that does not require fat supplementation (if possible). Peanut butter is also fairly low ratio, although we would normally think of it as a creamy high-fat food. We have always supplemented it with fat by mixing it with butter. Almond butter is actually a better keto-choice because it is lower carb and higher ratio.

Cheeses are interesting too. Cream cheese has always been the keto diet food of choice. But cheddar (and Monterey jack, which has the same ratio as cheddar), beats out whole milk mozzarella. Both beat out string cheese, which was one thing that was hard to take away from Nora at the beginning, and is not going to be a go-to food even after moving to MAD because it is well below 1:1 ratio. Nora also loves cottage cheese, but it is very low ratio. She enjoys cottage cheese swimming in cream, like cottage cheese soup! It is easier to add fat to cottage cheese than string cheese.

Proteins are the same story. Eggs, pork and beef are higher in fat than chicken and fish, as we all probably know. But even in the chicken category, chicken thigh is 0.42:1 ratio and chicken breast (not listed above), is only 0.12:1 ratio. And chicken thigh is cheaper and tastier, an all round better choice.

There are a few fun discoveries on the list. I love that edamame has both protein and fat. It’s a fun veggie that works on the keto diet or MAD with other fatty foods. Traditional full-fat Greek yogurt is at-ratio right now for Nora! She has it for breakfast every morning, topped with a few berries and some of her granola (the current recipe I made is 2:1 and balances out the berries). The Flackers that she enjoys are now above-ratio too. But even if your child is on a higher ratio, they are a cracker that fits well with the diet and can be topped with a high-ratio food like cream cheese and butter.

No matter where the ratio lands in a diet therapy, you can make meals more palatable by serving some high-ratio whole foods and not putting so much fat on the side. It gets easier at lower ratios when you have a larger selection of foods that are naturally above a 1:1 ratio. These are natural, healthy foods for any body and even better for anyone on a diet therapy for epilepsy or other medical reason.

Cartoned cream can be clumpy. A great deal of fat can be left behind, stuck to the sides of the paper carton. We open the carton, scrape out the solid cream stuck to the sides, and transfer it all into a mason jar. There we mix it up gently as best we can. Then, we like these reCap lids for pouring cream out of the mason jar (get the right size for your jars). Nora had a bout of breakthrough seizures after several seizure-free months early on the diet, and I strongly suspect this was part of the problem. Because of all the fat being left behind in the carton, her ratio would have effectively been quite a bit lower than our target of 3.5:1 at the time.

Keto-food superstars. Foods that are fantastic for the ketogenic diet:

Fiber. We consider fiber to be the fourth macronutrient (along with fat, carbs, and protein). It serves three very important functions: helping with constipation; helping to give weight and texture to a meal; effectively increasing the amount of sweet tasting foods. This is because “net carbs” are what matter; that is, the total carbs minus the fiber. This is one reason why raspberries are such keto superstars: they have plenty of carbs and delicious berry goodness, but they have a very high fiber content, which reduces their effective net carb count, which in turn allows Nora to have a lot of them.

Equipment.

The US Balance US-TT1000 scale is great. It’s easy to use for home, and it has a built-in protective lid and runs on batteries for taking on travel or to a restaurant.

Small rubber spatulas help you scrape the full measured amount of food out of a dish and serve it to your child.

Small silicone pinch bowls. We like these, made by NorPro. They are microwave-safe, so you can melt a small amount of butter, coconut oil or dark chocolate for drizzling over other foods. You can thaw a small amount of frozen berries to mix into cream or yogurt. They are sturdy but flexible, so you can cream butter into cream cheese or nut butters for a smooth high-fat spread. You can scrape them clean with a butter knife or spreader to get all of the fat out. And they are cheap! Order them online or buy at a kitchen store. We have 8 and use ours everyday.

Small spreaders (also called cheese spreaders or hors d’oeuvres knives) pair nicely with the small silicone pinch bowls. We have these cheap ones and they have worked fine. If you have a small child who can self-feed, they can use the spreaders themselves to put butter+nut butter mixture on a Flacker, for example. They work perfectly for scraping the silicone bowl clean.

Ice cream pop holders are wonderful. You can make very simple ice pops or add a bit of no-carb drink, one crushed raspberry, or cream to make a quick frozen treat. Any frozen keto treat will freeze solid, so you might as well make it a pop and let your child eat it slowly. For kids adjusting to the diet, this can be a real treat and make them feel like they are getting more to eat because it lasts longer. You can find more on our ice cream pop mold recommendations here, our post Cook’s Little Helpers.

We have also collected a lot of small dishes. We actually use one of the IKEA play sets daily. They are ceramic, food-safe, dishwasher-safe and microwave-safe. Serving sizes are smaller on the keto diet and it’s ridiculous to put Nora’s servings into regular sized bowls. Kid-sized plates and bowls are psychologically helpful as it makes the keto meal look fuller. They also fit nicely on the scale.

On the topic of dishes, we often let Nora choose a small dish if we are out shopping and need a little reward pick-me-up for good behavior. Many grocery stores carry some dishes. Maybe a little whisk, cream pourer, ramekin, or even a pretty napkin or candle that she can pick out. Several fun dishes have entered our collection, and the small meals made in the special dishes make the food feel a little more fun and special.

Restaurants. You can eat out at restaurants if you are careful and have appropriate expectations. Sushi and seafood restaurants work great as salmon sashimi, edamame and crab are all very keto friendly (be careful with fish, to be sure it is only grilled or poached). Another good option is to order a burger at a grill with no bun for your keto-kid. Typically we have the meal pre-calculated and pre-packed except for the protein portion, which will be supplied by the restaurant. We’ll weigh what we need of sashimi or hamburger at the table using our portable scale. There is of course some risk of hidden carbs, but we find it to be reasonably safe if we are at a restaurant with a menu we know well. I think meat from the restaurant — as opposed to something carby — tends to be a safer bet overall as it is usually prepared with nothing additional other than some fat or oil for cooking. However, many restaurants with a kid menu will have carrot or celery sticks as a side option, or possibly apple slices. Salads with dressing on the side can also get you greens and cucumbers to incorporate into the meal. You can always ask the server or cook if any additional information is necessary. It is also courteous to inform your server that your child has dietary restrictions, so they understand why you are dissecting her meal and giving her a little extra food from home, such as cream that you have brought with.

Consistency. There is no cheating on the ketogenic diet. Early in the diet, ketosis is fragile and the metabolism is eager to switch back to glucose-mode. Even a small amount of extra carbs can open the door for breakthrough seizures. Consistency allows for better troubleshooting too. Which brings us to…

Breakthrough seizures. Expect breakthrough seizures and a few rough periods even after extended periods of success. It seems that everyone we have talked with has had the experience of several weeks or months of good seizure control, followed by a period of loss of seizure control, followed by regaining seizure control. When this happens, keep your spirits up and look for any recent changes or anomalies (such as the clumpy cream issue). Be strict and rigorous and keep going. Seizure control will likely come back.

Even daily ratio. Consider applying the ratio evenly throughout the day. Early on in Nora’s treatment, before we went to a full ketogenic diet, we were very lax about what the ratio was during any particular meal, so long as the ratio was met over the course of the day. This means you could have a very carby, low-ratio morning and a very fatty, high-ratio afternoon, for example. It seems that seizure control improved when we evened things out. The one exception is at dinner and bedtime, where dinner is usually low on the ratio, and bedtime is higher, so that we can get a last chunk of fat into her to last all night. We made this change after some early morning tonic-clonic seizures in the spring of 2012.

Routines and expectations. Establishing routines and expectations ease the day-to-day grind. For example, Nora has three routines around supplements: baking soda in the morning after breakfast and in the evening during teeth-brushing before bed; calcium in her bedtime cream; and a multivitamin and calcium in her morning snack B^3. She’s not crazy about taking the baking soda and the calcium, but now that it is a well-established routine, there is no more fighting about it.

Keto-friendly alternative sweets. When possible, try to have a keto-friendly alternative for your child at birthday parties and other events where ice cream, cupcakes, etc…are served. This requires forethought and planning, but is huge for the psychological aspect for your child. If you can find out what kinds of treats will be served, you can make something similar. However, Nora now likes to just pick her favorite treat to bring along, even if it is different from the party treat. It’s still natural for her to admire the other treats, but you can help to…

Help your child understand the restrictions. We are very sensitive to this and we stress frequently to Nora that although her diet imposes some limits, it is still a very healthy diet with many truly delicious meals, and many people have some sort of diet restriction. When we first started the diet, Nora really took to a book called “The Princess and the Peanut Allergy.” She strongly identified with the food restrictions of the main character and the struggles and efforts of her friend to accommodate her. Try to help your child see the diet restrictions amongst your family and friends to help them understand that having some sort of restriction — whether it is a nut allergy, gluten intolerance, upset stomach after eating certain foods, low-sodium diet, etc… — is normal.

Solidarity! Eat keto-friendly yourself. Eating meals that look similar to what your child eats will help them feel better about the diet. Skip the bread and sugar; eat nuts, protein, vegetables, and fruit. As a happy side-effect, you may very well feel better and lose weight. Christy and I have both dropped about 15-20 pounds when we modified our eating to be more like Nora’s. Honestly, there have been many times after putting Nora’s dinner together (e.g., skillet-fried ham-and-cheese, avocado, red pepper, nuts), I’ve thought “I want that!” (Christy says: It takes all of my willpower to not eat Nora’s cheddar crackers!) Also, don’t eat the birthday treats at a party. It’s better for you and helps her feel like she’s not the only one.

Don’t expect miracles. Be happy with improvements in quality of life. We were one of the lucky ones that got full seizure control. But even if Nora still had some seizures (and I must accept that she might have more seizures at some point in her life), her quality of life would be much better than it was before the diet. If you are considering the ketogenic diet, chances are you are in the difficult group of epilepsies. Many of these epilepsies come with other problems too. The ketogenic diet may not be a miracle cure, but it could still be a great help.

It’s not “hard.” It is different. If you think the ketogenic diet might help your child, don’t accept any statement that the diet is “hard” as a reason for not trying it. I wouldn’t say the diet is hard. Epilepsy is hard. The diet is a tool that may improve your child’s quality of life and development. (Remember that if your child has failed two anti-epileptic drugs, the diet is statistically more likely to help than a trial on a third drug. Also, certain epilepsies respond particularly well to the diet.) However, the diet does require some changes to your thinking and expectations. Once you get your routines down and everyone gets a few months to adjust, the diet is not significantly harder than having other diet restrictions. Just different.

I’d like to make this a “living” list. To all of our keto comrades, I invite you to email us or comment on your particular lessons learned. I’ll add them to the list above.

We traveled to Portland yesterday, fighting the morning traffic for Nora’s keto clinic appointment. Nora continues to thrive and we delight in Dr. Wray’s obvious delight in her continued good health and seizure freedom. He ran her through the clinical neurological tests and we talked about lab numbers and other questions. Audrey, her dietician, said that Nora has one of the most beautiful growth charts of all of her keto kids. Knuckles all around! By the way, knuckles are the new handshake if you want to avoid illness this winter. Now you are in the know–pass it on.

It’s been a little while since we have given an update here, so I will catch you up. We continue to wean Nora from the keto diet a bit at a time. Better yet, she is still seizure free, 29 months running. Since the previous post, we brought her down to 2.25:1 for 3 weeks, then 2:1 for another 3 weeks. That was the last step in her wean plan before this keto clinic appointment. Yesterday we got the next steps in the plan, which I have scheduled at 3 to 4 week intervals:

The plan was always to move to MAD, but seeing what that means for Nora became more interesting based on our current wean trajectory. The first weaning steps had her protein increasing to get her up to the recommended daily intake of protein for a child her size, which is around 26 g of protein per day. After she hit that target, each wean step increased her carbs and decreased her fat, keeping total calories the same. At 2:1, she was getting 35 g of carbs each day. As we continue the wean, you will see above that the protein is coming up again, while the carbs stay the same for awhile. Then when we hit the target of 1:1 we have some options for the mix of carbs and protein.

The interesting part: if a kid is on the Modified Atkins Diet as a stand-alone therapy, they cap carbs at 10 g to 20 g per day, which is less than Nora is getting right now. Because we are coming off of the diet they took the route toward a more normal diet first and favored increasing carbs, but that isn’t exactly the route to ending with the MAD therapy. Thus, as she continues to wean off the keto diet, we will now do a little course correction and increase her protein again, but there is no reason to take away her extra carbs if she is tolerating them well. And she is not only tolerating them well, but genuinely enjoying them! It has been wonderful to have a higher carb allotment during our summer fresh fruit season. Nora has enjoyed peaches, plums, pears and melons this summer, and just added back some bananas because she really wanted to try them again. We’ve even added a gram or two of honey to her steamed cream and toasting bread with butter. She gets enough carbs to enjoy that little bit of sweetness.

Following the schedule, her carbs will inch up a bit again by Christmas break, then we can slowly make adjustments between the carbs and protein if we want to go higher on her carb allotment. That will be our decision to make when we get there. We will also be able to start experimenting with approximating meals instead of weighing, which we will probably do gradually as well. We will be able to give Nora an idea of the foods that she can freely eat on MAD, given that her protein will be unlimited. But even now we increase her protein and match the fat needs if she is hungry. She has never been on a calorie restricted form of the keto diet.

In a funny twist of freedom, Nora ended up with an approximated lunch yesterday because we forgot to bring the scale to Portland with us! We planned for lunch at the McMenamin’s Kennedy School, where the Ted and the kids watched “How to Train Your Dragon 2″ in the theater-pub. Nora had the hamburger kid’s meal, which comes with a side of carrot sticks and apples if you ask for them (normally it will come with celery as an option, but Nora doesn’t like celery even though she can eat it freely!) We had the meal all calculated, and brought cream to drink on the side, but no scale. Ted did a great job of estimating the hamburger and veggies and Nora was just fine.

Now that I am writing about this end-stage to the wean, I wish I had more time and quiet to talk with Dr. Wray about it. He took the kids into the hallway to do the walking/running parts of the neurological test and we got a chance to talk to Audrey about the wean, but I have more questions. I want to talk about the difference between the typical MAD breakdowns with so little carbs, and Nora being on higher carbs. I’m not sure if we are still shooting for mild ketosis or if we should expect her to come out of ketosis if we push her carbs up to 54 g in the final 1:1 option. In the end, the real answer is: “We don’t know. Nora will show us what works for her.” That’s the right answer because everyone is different. But it still helps a parent to talk it out in a little more detail for your own kid. That’s always a take-away from these appointments for me: to be extra prepared in thinking through the questions and taking extra time to develop questions in the moment.

And it sure would help if the kids were not in the room making a racket. We cram the 4 of us and 3 of her keto team into a small exam room, and my brain stops functioning efficiently. But that’s my problem, and it’s not treatable by modern medicine. Just a little more mindfulness.

We will have another appointment in March and are free to ask questions along the way. In one more bit of good news, Nora might be free of blood draws for some time and can start scaling back on the baking soda when she gets to 1:1.

There are a few more summer highlights to catch up on, things I could have blogged about but didn’t have much to report in terms of lessons-learned. We traveled to North Dakota to visit family for the first time since starting the diet. We got a cat and named her Gracie. We went camping, visited friends in La Pine and spent a week at the Oregon coast. We ate our rooster, Freddie, and enjoy eating the eggs from our hens, Sparklebeak, Starfall and Solveig. Nora is in first grade and started taking piano lessons. We hope she learns some Spanish this year to put her nice accent to use. Nora still loves to sing and dance. She is a happy kid, and that’s what really matters every minute of every day.

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About the Brekkens

Nora had her first seizure in 2010 when she was 2 years old, then developed myoclonic seizures in 2011. After 2 antiepileptic drugs failed, she started on the Modified Atkins Diet and gradually moved to a ketogenic diet. She has been seizure-free since April 2012 and is now back to a Modified Atkins Diet.

Christy and Ted Brekken maintain this blog to chronicle our story and reach out to other families with children who may benefit from the ketogenic diet. We also facilitate a support group through Doernbecher Pediatric Neurology, OHSU, in Portland, OR.

About the Swicks

Jaron started having seizures in 2011, just before he turned two. After trying 3 medications while having over 200 seizures per day, his family heard about Nora's story and went to Doernbecher Pediatric Neurology for help. Jaron was immediately diagnosed with Doose Syndrome and started on the ketogenic diet with a hospitalized induction. He has been seizure free since November 2013 and completely off antiepileptic drugs.

Amanda and Jason maintain this blog and a support group through Doernbecher Pediatric Neurology to reach out to other families using the ketogenic diet to treat epilepsy.